EDS IV (VEDS) Awareness Photo - I also have this variety, among others. As a result, a valve in my heart swelled to the point where the doctors were surprised it had not already ruptured. I was only seven or eight at the time.

(EDS) Teenager, 18, is fed through her heart via a drip after being diagnosed with life-threatening tissue disorder But the inspirational teenager today said she refuses to let the illness take over her life and revealed she is determined to remain positive and raise awareness. 'I don't know how long life will be, but I have got the condition for a reason and I just have to fight it and keep happy,' she explained.

What mum doesn't relate to the title of this blog? Sleepless Nights is Tasmanian writer and mother Veronica Foale's blog about her life dealing with two children on the Autism spectrum; as well, she and her kids have Ehlers Danlos Syndrome, which she also discusses in her blog. It is a real look at mothering children with special needs. No punches are pulled and the dirty bits of motherhood are rarely tidied up, which makes it a refreshingly real read.

But You Don't Look Sick: Living With Chronic Pain (Ehlers Danlos Syndrome) by Rei Haycroft. Excellent video for hypermobility pain issues! Wish I could show this to everyone. Maybe then they'd see my invisible disease!

But You Don't Look Sick: Living With Chronic Pain (Ehlers Danlos Syndrome) - YouTube My name is Rei Haycraft, I have Ehlers Danlos Syndrome, and this is my story. Please share this video to anyone who lives with EDS or knows someone affected by it. Together, we can raise awareness, understanding, and support.

GREAT site with lots of craft info/templates, etc. Her son has a life-threatening disease so she offers all the templates and such for free in hopes of getting info about the disease out there. Please take a moment to visit her site.

Ehlers Danlos Syndrome: the definition, the importance, what it means, what it does, and why it matters.

Oh that poor baby, I couldn't help but tear up for him.. this is why we get tested and TALK about EDS, to raise awareness and work towards treatments... because I can't even imagine passing this on to my own baby- Ehlers Danlos Syndrome Awareness Video

Ehlers Danlos & Mast Cell Activation Disease ... I've talked to his mom on email. So glad she found treatment and knows what is wrong now.

Ehlers Danlos Syndrome, this is what my kids deal with!

Ehlers Danlos Syndrome Awareness Video What my friend Mandy has and one reason she's such an inspiration to me.